Cancer Diary: Emily Hourican is fitted for her radiotherapy mask - 'I see my old life drifting further away from me'
In week two of her Cancer Diaries, Emily Hourican is fitted for the mask she will wear for her daily radiotherapy sessions. She is still determined to believe herself a 'person who is, in the scheme of things, lucky'
This week was mostly about The Mask. I have been hearing about this mask since very shortly after diagnosis. "You'll be fitted for a mask," I was told, at various intervals, in a way that made it seem like just another staging post along the road.
Which, for them, I suppose it is. My appointment came around and the kindly technician asked, "are you claustrophobic?" I said no, believing that to be the truth. Actually, a better question on his part would have been: 'are you bothered by being clamped into something that is heavy, incredibly tight, cuts off all movement and greatly restricts your breathing?'
The mask is moulded to my face while warm and wet, extending from the back of my head down to my shoulders. It dries and sets, hard, and is then bolted to the table, with me inside it. This is the mask I will wear every day, for 15-20 minutes, during treatment. The mask ensures that the radiotherapy is as minutely targeted as possible, hitting the bad cells, missing the good ones. Therefore, the mask is essential. It is my friend.
But there are some bad moments in there. Moments during which I am forced to draw on everything I have ever learned about deep, slow breathing, about not allowing myself to spiral into full-blown panic, about simply relaxing into the moment, nasty as that moment is. The temptation to struggle, to claw at the constricting heaviness of it, is huge. Instead I try and remember St Teresa's prayer: 'Let nothing disturb thee, let nothing affright thee, all things are passing.' All things are passing I gabble silently to myself, hands balled into sweaty fists. Scenes from the 1977 film of The Man In The Iron Mask with Richard Chamberlain play out inside my head - the end of that film, with Louis XIV bolted into the mask and locked up in the Bastille, bashing his iron-clad head against the walls, used to terrify me as a child. I always thought that no fate could be worse than that one. Funny where life takes us.
My life seems to have split in two and is running along parallel but disconnected paths. On one path is the usual Me, who goes to the shops, drops the kids to school, collects them, puts on a wash, cooks dinner, looks forward to watching Homeland. But racing in tandem with that me is the other Me, the cancer Me, who has to fit in hospital appointments, long, exhausting chats about whether or not I need fluoride trays to keep my teeth from crumbling following radiotherapy, about whether it would be a better idea to get a stomach tube fitted now, while I'm fit and strong, rather than waiting until I am debilitated and in need. Half the time it feels as if I am talking about someone else when I matter-of-factly discuss things like the gag reflex that will stop me from swallowing in a few weeks. For the other half, the realisation hits in small, successive waves, like enemy fire at a protective shield. Some of the bullets bounce off, others land a direct hit.
This is when the tracks converge. When the usual Me has a sudden, horrible realisation: 'This is actually all the same Me. That person I'm talking about who needs to put structures in place to ensure the continuation of a life she can no longer lead, is actually Me.' In those moments, I see my old life ever further away from me, so that it feels like I am on a ship, heading out to a dark sea, looking back at the twinkling lights of home behind me.
If the famous Kubler-Ross five stages of grief are true, I seem to be stuck, bouncing back and forth between denial and anger, unable to move on, unable to get over the fundamental unfairness of it. Actually, recently I might have graduated to bouts of depression as well. "I can't do this," I think. "I just can't." And there I stick for a while, unable to struggle forward to the inevitable next stage of that thought: "but I have to." Eventually something snaps me out of it, often just the simple realisation that I don't have any choice. I have to do this.
Right now, it seems to me that nothing more profound about the human condition has ever been written than Beckett's 'I can't go on. I'll go on'.
Part of the problem might be that I am still in what feels like the phoney war. Peace has clearly broken down, but actual hostilities have not yet commenced. Treatment hasn't started, so all the horrors are still very much abstract ones. But at least now I have a date - December 21. And suddenly I am desperate to begin, because until I begin I cannot end.
Soon I will know what drug I am getting along with the radiotherapy. Because I have agreed to take part in a clinical trial, to see if there is a viable, perhaps less toxic, alternative to the current treatment, I will be randomly assigned either chemotherapy or a different, newer drug. Once assigned, I will know what I'm getting, but the actual choice is up to the universe. And, although both are highly effective in treating the cancer, there are pros and cons to each in terms of side-effects. We all know a bit about chemotherapy and the way it sledgehammers the body's immune system, opening up the distinct possibility of infection. The way it can cause impaired hearing, early menopause, hair loss. "I don't want you to lose your hair, mummy," the four-year-old said. "You have beautiful hair." She must have heard me talking. The new drug doesn't do that, but it brings with it an 80pc chance of acne and increased mouth ulcers. Swings and roundabouts, I say to myself, although surely there must be a more appropriately subdued metaphor than that?
People keep advising me to 'take control' of my medical journey. I have absolutely no idea how to do this, or even what it means. I don't know anything about this area, and I've forbidden myself from poking around on the internet. Mostly, I just let the doctors get on with it. I do ask lots of questions though - mainly about process: What? Where? How much? And, above all, how long? 'How long will it take,' I ask, urgently, about the radiotherapy sessions and drug infusions. It's as if I think I will still be a busy person when all this kicks in, a person with places to go, deadlines to meet, lunch appointments to honour, a friend to meet for a drink, Pilates classes. Someone who wonders how they will possibly fit in these bothersome medical appointments. Who am I kidding? I will be a person who moves between home and hospital, in ever-tighter circles as the more distressing side-effects kick in. Who takes each day as it comes and doesn't make plans in case the plans cannot be seen through. A person whose world has shrunk down to measuring out the hours between pain medication and high-calorie smoothies.
But then, when it is over, after just seven weeks, I will be a person who is free of cancer. A person who will most probably never have this cancer again. A person who is still, in the scheme of things, lucky.
And meanwhile, I am a person with a lot of new friends. After last week's article and talking to Brendan O'Connor on RTE radio on Monday, I know, more fully than ever, that the world is full of wonderful people. Decent, supportive, encouraging people. Some of them I know, some I used to know, some I have never met and probably never will. Many are much farther along this new road of cancer than I am, and are cheering me on out of nothing more than the fundamental kinship of kindness. I guess this is what they mean by the community of man. I'm glad to find it.